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MS Fatigue – When My Tank is on Empty

MS Fatigue – When My Tank is on Empty

A newly diagnosed person was asking about fatigue and I went looking for information to share.  In the process, I learned a few new things about MS fatigue, but first I need to back up and explain MS fatigue, because it is different than normal fatigue.

Starting with a full tank

I like the analogy that I have heard before that we start our day with a full tank if we are lucky, but some of us may only be partially fueled to start out.  The faster we go, the harder we push and the more we do, the more of our tank is used.  If we pace ourselves correctly we can skid into the end of the day, often running on just fumes, and spend the night refueling to do it all over again the next day.  If we miscalculate and use more of our energy than planned and try to exceed what is available, we can be brought to a screeching halt and left sputtering. You know that feeling, right?  You’re cruising along and feeling ok and suddenly your body tells you it is time to stop.

Now what is it that drains all that fuel beside the normal day to day activities that everyone experiences?  For me the major difference is it takes my central nervous system and body a lot more effort to move and maintain balance to keep me upright.  Rarely do I walk without being conscious of how I am walking and making sure I am firmly planted with every step.  People without MS just walk – and don’t use any extra energy doing so. I don’t know the scientific answer as to how much more it takes me, but it feels like it is at least 5x’s harder than my healthy peers.

Fatigue is one of the most common symptoms of MS

While reading a refresher Multiple Sclerosis:  Clinical Manifestations,1 the numbers again jump out at me – two-thirds of people living with MS list physical and mental fatigue as their primary symptom.  They clearly explain the differences and how MS fatigue is different from the tiredness that comes from a hard day or simple overexertion. MS fatigue is so prevalent, and about 1 in 3 people report this fatigue BEFORE they are diagnosed – such as ‘doctor,  I get plenty of sleep but I still am exhausted –what could be  wrong?’.

I was surprised to learn –yes, if you remember at the beginning I said I learned some new things  – that fatigue does not correlate with our other symptoms.  It doesn’t match up with our lesions, inflammation or depression.  We may be fatigued, but it doesn’t necessarily mean our muscle strength is weaker.

We all know about fatigue from doing too much, getting overheated or battling infections – those causes of fatigue are usually obvious and come from an increase in our body temperature.  What’s less obvious might be the things that bring our temps up just a small amount but still affect our energy.  These are the types of things that can cause us fatigue without our having done any physical activity.

Our body temperature rises later in the day

The author mentions that there is a slight increase in our body temperature in the afternoon – I had not heard this before, but it sure would explain why I have a bout of fatigue almost every afternoon in the 3-5:00 range.  They also mention an increase in temperature by a half-degree  in women post-ovulation in the final days of their cycle (luteal phase, days 15-28). The question about menstrual cycles and MS come up every once in a while and now I have a solid answer to share about the associated fatigue. A body temperature change of as little as one-half of a degree can create problems in the MS riddled body and there are many scenarios as to how that might happen.

Daytime fatigue can also come from sleep disruptions we might not even be aware of, such as restless leg syndrome. But for me, the worst fatigue comes from any physical activity that lasts longer than a few minutes. I can work all day long at my desk or computer, but the act of getting up and moving quickly drains my tank.

Besides taking pharmaceutical agents for energy and learning to pace myself, I am still looking for ways to combat the fatigue. Any suggestions?  I would love to know if others have unlocked the secret to keeping their tank at least half-full.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

  1. http://www.medmerits.com/index.php/article/multiple_sclerosis/P2. Retrieved from the web July 18, 2014.

Comments

  • staceyspencer
    3 years ago

    I found taking a Vitamin B12 has helped me with my fatigue. I notice since I have been taking them for about 3 weeks, I have had a lot more energy.

  • DoWell, Dinah
    4 years ago

    I can so relate! It reminds me of a blog post that I wrote not too long ago: “My Revised Spoon Theory.” http://dinahdowell.com/my-revised-spoon-theory/

  • Becky
    5 years ago

    Laura, it’s like you used my thoughts and turned it into words for me ..thank you. I have had two recent events that spotlighted my fatigue and weakness. I went the cherry blossom festival in DC and after escalators down, elevator lines, and more than my usual walking, I was utterly exhausted that evening into the next day. The other was a work Excel class that was three hours and involved lots of practice, follow directions, hands-on type thing. I really saw the difference in the two feelings of drained, but overall I have to say your comment about the energy we expend to do comparable things is what’s key. My coworker breezes through the class and then goes to happy hour. I can barely make it home and have a pounding headache because I was “empty” Those at festival had a leisurely day and enjoyed the blossoms. I felt weak, exhaused and felt like I got out of boot camp training and now don’t even like cherry blossoms. (just kidding)
    So thank you for pointing this out, and overall I think we need to give ourselves acceptance and permission that it all takes more out of us, and it is ok to go slower, take breaks, take the weekend off and not compare it to others’ tanks.

  • Susan
    5 years ago

    Thanks for this article. I have had to ask my doctor a prescription for Provigil for my fatigue. I use it very sparingly – only when I KNOW I need to have a long stretch of energy and concentration. Sometimes I don’t use it for weeks. Some weeks I use it a few times a week to keep my energy steady. My fatigue is unpredictable and frustrating.

  • Becky
    5 years ago

    Susan, I love Provigil and alternate with adderall…do you stretch out provigil because of the cost? Even with copay assistance and insurance, it’s over $200 a month, but I wish I could take it every day. It’s night and day difference in my quality of life

  • PaintedTaz
    5 years ago

    I just wanted to thank you for this article! Sometimes I get so frustrated with my fatigue and then it helps me to put it into perspective when someone explains it again.

  • Laila
    5 years ago

    Hi Laura, Honestly the best thing that has managed my chronic fatigue, has been acupuncture to the head, neck and spine. There has not been a time that it didn’t “wake me back up.” I was never a believer until I was diagnosed and that became one of my only means of fatigue treatment. I can feel the blood rush back to my head and my color comes back every time. I am not on any medication. I steer clear of processed and refined white sugars and flours because I quickly learned that it knocks me on my butt and there I am calling my acupuncturist. Good luck to you <3

  • pamelajoy
    5 years ago

    Absolutely food choices are a huge factor for me… I notice if I have any fried food, the next day is particularly difficult. The more whole and fresh foods in my diet, the less fatigue I experience as a whole.

  • Laura Kolaczkowski author
    5 years ago

    Laila, I love my acupuncturist! He studied in China, has a doctorate in Oriental medicine, yes, that is a real degree, and in Ohio they have to be licensed by the Medical Board. I wish it were covered by insurance so I could go more often. I also you a massage therapist and between the two they keep me going. best, Laura

  • isashisha
    5 years ago

    I def love using the spoon theory. Having EDS, HyperPOTS, Dysautonomia, various neuralgias and recently finding out my EDS caused MS….my body stays on fumes. One MAJOR thing ive found is so important is jacking up our vitamin d3!!! Why doctors dont mention this more, especially to MS patients, is beyond me. D3 helps support your hypothalamus..which in turn regulates your endocrine/pituitary/adrenals etc. Most of us with MS have d3 thats about 1/3 of what we should have and that also brings on a faster progression of symptoms. Times when its darker out…when people normally get depressed and ran down…its because the sun is no longer activating the hypothalamus to produce as much of the d3 as we need to keep our fickle bodies stabalized. Since ive started taking 10000mg(?) of d3 and also more b12 ive noticed a gigantic difference in fatigue, cog fogs, depression, sleep etc. Good luck and great article!

  • isashisha
    5 years ago

    also you need to think about not what all is causing the fatigue but where its actually stemming from. docs are so quick to treat symptoms without getting to the root. most of this can be helped ‘some’ by taking the right vitamins and supplements. i didnt believe it til i tried it~

  • Julie
    5 years ago

    Fatigue is such a bad word. When I use up my fuel, there’s no telling when my energy will come back. I haven’t quite mastered the “reserve” part of it. For me,it can take days or even a week to recoup from a nasty beating like fatigue.
    I also feel as though I’m battling demons with my emotions. Highly irritated for the most part. Need to somewhat get those emotions together.
    Vertigo and losing my balance and getting stitches then hurting my hip in a fall and even popping a shoulder out and feeling it pop back in after a tumble down some stairs has me realizing my life has changed so drastically. I was denied Plegridy and now waiting for insurance to accept the fact that rather than injecting once every 14 days, (which would be so convenient for me), that maybe 3 times a week will suit them better if the Rebif prescription falls through. Deep down, I’m looking forward to hopefully seeing some changes, but they tell me it will just slow things down the so I can function more clearly. I’m really looking forward to that.

  • Demyllynn
    2 years ago

    I’m new to this MS life and want to know how do you recharge?? What do you do to help get back your energy? Sometimes after a day out and about I can be get exhausted and feel half sick. It can takes days to feel stronger!! If I try to lay down for a nap my brain won’t shut off!! Any suggestions??

  • Julie
    4 months ago

    I just take it easy for as long as it takes to regain my energy. I still haven’t got it down pat NOT TO use up all my energy in one day. I also found out that the heat which I do not fair well with, will drain energy from you just as bad as using it up doing chores or whatever.
    You just have to take it easy. Take care of you. There’s really no other way to get it back if you don’t.

  • Silverdracos
    5 years ago

    I actually prefer the punching bag analogy to the spoons. Mostly because I’ll be going along fine and then it’ll blindside me. . . Maybe a bus?

    The afternoon slump is there without a doubt, but my biggest pitfall is getting angry/upset. If I get emotional enough for my heart rate to spike I’m done for the day. Doesn’t matter who or what. Last one was a disappointing report card. I still haven’t managed to send the email to the teacher about it.

  • AJoy
    5 years ago

    Very nice article, thank-you. While I do like your analogy of the fuel tank, you say “spend the night refueling to do it all over again the next day”. One of the things I like about the spoon theory is that I can easily explain that if I “borrow” against tomorrow’s spoons, I can NOT always get them back the next day. I have found that often, with SPMS, if I push too far today, trying to get everything done, I can’t always “refill” the next day.

    I got myself forearm crutches 2 summers ago, so that I could attempt a “hike” into the woods. It was a wonderful experience, being able to get to the stream and waterfall, even if I did feel like a baby giraffe at times, lol. It took more than everything I had for a week, and almost a month to get back to “normal” (esp in the summer!), but was well worth it!

    Thank-you!

  • corianna
    5 years ago

    Laura, I’m so glad you explained the afternoon temp rise. EVERY day, no matter what I’m up to, work or weekend, the 3:00-6:00 hours are very hard for me. I have the drop-foot problem with walking and it’s been very frustrating that no matter how I work, exercise or rest those hours are bad. I feel so much better just knowing WHY it happens. Thanks for sharing!

  • Tess
    5 years ago

    It was cold today and at 300 ish, I got so hot. Made no sense…now it does. Thanks for that!

  • LynnK
    5 years ago

    In my case MS fatigue is so debilitating. Several years ago Provigil was prescribed and it really helped…then insurance said No more…next Nuvigil and it helped give me a somewhat “normal life” then insurance said No more. Now I am taking Adderall (sp) which insurance will pay. In the past year, my legs have gotten weaker because I am too tired to walk. I think it is really sad that my quality of life has been changed so much because someone made the decision for me of what I can take and what I can’t. Fatigue is so misunderstood in the insurance industry.

  • MSmichelle
    5 years ago

    Agreed! I’m on exactly the same program… another problem I deal with is managing the timing of taking the Nuvigil because it drastically affects my sleep schedule. Some days I don’t take it because I know it’s a drug induced ability to function on a more normal level. I’ll plan to do nothing. I usually sleep for like 18 hours on the days I take off from medicating the fatigue. The drugs work the way they’re supposed to, but dang! It would be lovely to actually solve the fatigue problem at the source.
    MS fatigue is not only misunderstood by insurance companies… I have a hard time even explaining it to friends and family. It’s so terrible and sneaky and hard to explain. It’s nice coming across articles like this that give me better examples of how to explain how I’m feeling to loved ones.

  • Laura Kolaczkowski author
    5 years ago

    Lynnek, have you had a sleep study done? So many people with MS do have sleep problems and by proving that, you can get Provigil. It is ‘off label’ for use in MS Fatigues and that needs to change by the FDA but for now, you often have to demonstrate the sleep problems. That’s why my insurance has covered it – even with a generic version of Provigil – modafinil – the cost is ridiculous. My insurance statements show they pay several thousand dollars for my 90 day Rx. – Laura

  • Tess
    5 years ago

    The insurance company denied my prescription for 40mg Copaxone 3 x week, claiming it is “medically unnecessary”. 20mg daily is sufficient according to them. They don’t care about the emotional toll MS takes on us. I am appealing, of course.
    They only care about their bottom line.
    The fatigue hits hard, sometimes just after getting ready in the morning. Walking drains me almost immediately because of the effort it takes not to fall. Thanks for sharing!

  • Matt Allen G
    5 years ago

    You were unsure of the science, here you go; “The exact mechanism of MS fatigue is not known, but studies suggest that changes in the brain caused by MS may require MS patients to use five times more effort to complete a simple task than a person without MS,”

  • Laura Kolaczkowski author
    5 years ago

    Wow, Matt. I guess I nailed that one with my 5x’s guess, huh? Thanks for verifying this. -Laura

  • Debbiejorde
    5 years ago

    Your article is spot on for me! Thank you! I meditate/rest, minimum 20 minutes after every 3-4 hrs of activity. This helps refuel my tank and keeps my attitude positive. This practice is as important as air to me and no one comes before my rest. Learning this and training people around me has come step by step over the 5 years since my diagnosis. Also, I don’t do anything I dread…I change my attitude or cancel the activity. Not easy… But practice makes perfect:) Happier me equals happier people who know me!

  • north-star
    5 years ago

    This summer I had what another blogger here described: lassitude. I’d never heard of it but it’s a real, official MS thing. Profound exhaustion. I love the spoon analogy! My spoons were all flat. I felt like a shiny balloon that has slowly leaked helium but still floats a foot or so off the floor.

    After a couple of weeks I just had to revamp my expectations of what I could accomplish. I was more open informing friends and family about specific issues that affected what I was doing, I had never done this before. It helped a little, but it changed my relationship to a lot of people who’d seen me as someone with a great attitude, always up for volunteering, friendship, etc.

    That made me sad. It was a tough summer. I’m back at about 75%, but I feel I’ve lost a lot more. I have the pride that Sonia described, not wanting to be open and trying to do what Lynn described as POR. It’s worth at least 5 spoons!

  • Tess
    5 years ago

    Found myself in same scenario…told friends why I couldn’t do some things with them and why. If they don’t see evidence of illness or just tiredness, they think you’re fine. Those people don’t invite me, or even talk to me anymore. Also tell other people mot to bother with me cuz I’ll blow them off. Very sad.

  • Sonia Hofmann
    5 years ago

    I have recently been given Methadone for MS pain…believe me, the pain has greatly decreased..but…I feel drugged? If that makes sense… And coupled with the MS fatigue I am in a fog most of the time. I am hoping this ‘fog’ eventually passes..and becomes livable…I have been told to ‘pace myself’ to combat fatigue in MS..trying not to stay long at one thing, resting in between..I can do this when I am alone, but with friends and family I find I push myself into exhaustion not wanting to ‘complain’ or ask for help. Why? I don’t know…pride? I then find myself in full reverse for 2/3 days. Can anyone comment why we do this to ourselves?

  • isashisha
    5 years ago

    omg get off of it as fast as you can! methadone RUINED my system. i was on it for about 4yrs and weened myself off. Ended up causing all my teeth to crumble…i started having seizures from it. unless you absolutely can NOT get ANY relief from other meds i would so ask to get off of it before it does more damage to your system. ive had great luck taking dilaudid 4 mgs 4-5 times a day. i was taking 10mg of methadone 5 times a day back when i was on it. plus i didnt like always being treated like a heroin addict. have enough issues without THAT stigma as well. good luck :>

  • Tess
    5 years ago

    Methadone is basically the equivalent of morphine and heroin. No wonder you were out of it. Nasty stuff. Definitely talk to your dr.

  • Laura Kolaczkowski author
    5 years ago

    Sonia, So much is taken away with MS and you sound a bit like me in that we have always been the type to POR -‘pushed on regardless’ and that is hard to stop. Saying no, or not now, isn’t necessarily in our vocabulary. Pride? Probably. stubborness – definitely. But also the desire to still be normal, whatever that may be, and that includes doing things with others who we have relationships with. So often it is about us and our MS, but there are times we want it to be about them and we push beyond the breaking point. I hope this makes sense.

    As for the Methdaone for pain – I am so glad it is under control but would say you feel drugged because you have been drugged. That is a serious drug to manage pain and you really need to speak with your doctor about the side effects. I have a dear MS friend who also takes serious drugs for pain, and the initial time after doses renders her almost incoherent she is that ‘drugged.’ It knocks out the pain but also knocks her out. Please talk with your doctor about this side effect. best, Laura

  • zenhead
    5 years ago

    surely you’ve heard of The Spoon Theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/), an excellent way to describe this kind of fatigue – similar to your fuel tank example.

  • Laura Kolaczkowski author
    5 years ago

    The spoon theory is also a great explanation of living with chronic fatigue and understanding limits. That author may have Lupus but it applies to all of these chronic conditions. best, Laura

  • Laura Kolaczkowski author
    5 years ago

    Thanks, everyone, for the comments. I love hearing everyone else’s thoughts on the subject. Wouldn’t it be nice if there were a simple step or two we all could take to get through this. Diet and exercise can help some of us, but unfortunately not all. The people hit hard with PPMS that progresses rapidly would love to be able to exercise and eat their way back to health. I do feel better when I am taking better care of myself. -Laura

  • LoveandLight
    5 years ago

    With MS it seems there are many things you can’t control. I speak from the experience of an observer. Someone very dear to me struggles with the fatigue. I do not know what it is like to live day-to-day in anyone else’s shoes but my own. Still, I tend to lean toward the side of Healthy Eating, Vitamins and supplements. It’s nature–so if you put good in, expect good results. Like Eatwellinda said, greens are important. Thinking of raw or healthily-cooked foods as “fuel” is helpful, and thinking of water as detoxifying and energy-boosting is too. Thank you for this article, and for everyone’s insight.

  • Johan
    5 years ago

    I was told the analogy of spoons, energy costs an individual spoons. Each person has numerous spoons to make it through the day. When I was 18 the spoons probably seemed unlimited. Today, at 45, with 2ndryPRRMS, it seems like about a dozen spoons to get through the day. I like the eating thing mentioned by Eatwellinda. I am a reluctant medication taker. I think of it in terms of cooperation, not combat. I have been fighting my whole life, I’m tired of it, I do not think it helps my condition. If this condition is what it is, I believe acceptance, faith and continuing to continue, are the key. But what do I know…

    JE

  • Eatwelllinda
    5 years ago

    I’ve discovered the powers of food. The way i fuel my body really helps me keep my tank relatively full all-day. Filling up on whole foods especially greens like kale (my fav) and also eliminating the foods that zap your energy such as but not limited to refined sugars, gluten, dairy, artificial sweeteners, preservatives, soy. Oh and can’t forget hydration. Water is one of the key nutrients in keeping you energized.

  • milesap
    5 years ago

    There is a major difference between fatigue and weakness. I feel most MS patients complain of weakness and fatigue. Anyone with MS knows you suffer from both. When ever I see articles about fatigue,it gets rolled in together.

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